ITV Tonight programme on Opioids

[Joseph_Cooper]

Are you on prescription painkillers?

Are you worried about the effect they are having and the possibility of addiction and dependency?

ITV's Tonight programme is making a documentary about opioids / prescription painkillers and wants to speak to you about your experience.

If you would like to find out more about how to share your story or know somebody else that does, please write to [e-mail] or to Joseph_Cooper on the forum.

[Loramay]

I wish people would stop knocking opioid medicine I have been taking different ones on and off since a motorbike accident 35 years ago. For the last 5 years I have had to take them daily but it helped me stay in a job I loved doing until last year when I had to take early retirement due to ill health. My life was turned around when I was given fentanyl patches for the next four years I was able to walk with little or no pain. Unfortunately I was then diagnosed with lipoedema and lymphoedema along with osteoporosis. The first two didn't make a difference to my job but the last one did as I worked with teenagers and young adults with special needs and could injure me. This was because l hadn't realised that I had broken my pelvis and spine and thought it was sciatica playing up and it was 5 weeks before I decided to visit my doctor and get an x ray. I am still on the patches but it means I am not in a wheelchair, need carers apart from my family and still have my independence, which to me is the biggest advantage

[waylay]

Grumble. I wrote them an email saying that looking specifically for people concerned about / having trouble with addiction/dependence would result in a biased show. They should also be looking to talk to people who don't have problems!

[Min-Pain]

I have been on high doses of oxycontin & oxynorm for a number of years now, The only thing i don't like about oxycontin is the brain fog (memory is affected a lot) i now suffer from. I don't have an addictive personality so i will never become addicted to them. They do what there designed to to. I have never ever had a desire to get a kick from a medication.

[Hidden]

I've been on codeine and co-dydramol for a few years for chronic pain - and never had a problem with addiction. If I'm having a good day I take less, on a bad day I take the full prescribed doses.

[Itsallinthehips in reply to Hidden]

I’m very surprised you’ve been prescribed both of those as they are both codeine, do you live in the UK? I’m glad they work for you though x

[Hidden in reply to Itsallinthehips]

I take co-dydramol during the day and the codeine at night. Never both together.

[freemanboats003]

I have taken high and sometimes very high disages of opiate pain killers without which I'd have zero quality if life and would be screaming in agony which is how I was before I started taking stronger ooiates like morphine, methadone, fentanyl, buprenorphine etc.

I'm 51 yrs old in a few weeks and I was born with Ehlers Danlos Syndrome, Classical Type. My pain started after physical exercise when I was 4yrs old, it was constant 24x7 when I was 10yrs old and the recurrent full/partial dislocations started when i was 11yrs old.

For over 20 yrs I was prescribed codeine which took the edge off the pain but nothing more, by the time I was 30yrs the pain was severe & I had no pain control. For the next decade I took morphine (120mg/day). I became a FT wheelchair user and had to give up work when I was 40yrs old after a series of infections, two of which resulted in 5 surgeries & a 4month stay in hospital. Folloeing the infection I develooed Complex Regional Pain Syndrome (CRPS) & Hypersomnia. CRPS is the most painful condition known to doctors beating both amlutation & chikdcare unto top spot. It was duri g this periid when my pain was kut of cintrol that I started taking very high dosages of opiates, first was.

Fentanyl Durogesic Patches 800mcg (4 x 100mcg down each arm), after a yaer the fentanyl became toxic & I started getting twitches & other side effects J was moved onto:

Buprenorphine but this gave me very little pain control so I moved over to:

Methadone 160mg/day which I built up slowly over a 4 week period in addition I was prescribed 8 x 800mcg Fentanyl lollipops pain & 120mg / day of Sevredol (morphine) for breakthrough pain. Tbis combination worked really well & I took this until 2011 when an urgent bulletin was issued by the FDA saying that dosages of greater than methadone 100mg/day had a very high risk of Adukt sudden death syndrome. Whilst I'd been taking methadone my QT interval in my heart was increasing & my heart was monitored closely.

The decision was taken in 2011 to reduce my methadone dosage to 100mg/day, at the time I was terrified of having poor pain control but I had just received fuding after a 3yr batttle for a 4 week residential pain management course at Bath. After I attended the course I was started to reduce my methadone but instead of stopping at 100mg/day I came off the methadone completely and swapped to Sevredol 720mg/day but using fast acting morphine meant my pain control was up and down so I moved over to:

Zomorph (Slow Release morphine), I started on 300mg every 12 hours and slowly increased the dosage until I had adequate pain control. This was achieved at 600mg every 12 hours which I have been taking ever since.

I also have 80mg Sevredol (Morphine) every 2 hours that I take for breakthrough pain when required. Travelling on buses/trains is when I have to use it the most, otherwise I have the best pain control I've had in decades.

In 2011 I began to start exercising in order to build up the muscles around my joints to help decrease the dislocations, it was hard work and I have to take morphine to exercise otherwise the pain is too much but it's taken 7 years but I nkw no longer need a wheelchair and jts very rare that I use my crutches (twice in 6 months).

During the last 40 years that I have taken opiates I have only once had anything that could be described as a high! When I was prescribed dihydrocodeine instead of codeine, nevertheless I only took it for a week.

I've never had any problems taking Opiates but then I take the exactly as prescribed and my Pain Management Team make me sign a contract that says if I don't take them as prescibed I won't be given opiates. I have annual assessments of my suitability to take opiates.

On occasions I've been ill abd eithr haven't been able to absorb my meds or been too unwell to take them I have gone into withdrawal which is every bit as horrible as anyone experiences it, hot/cold sweats, shaking, bad tummy, etc as my body but this isn't tge same as an addiction where I have to take the drug to get a high.

I have known pmenty of peolme with chronic pain over the years who have had problems taking opiates, every one of them either took more than the prescribed dosage or didn't follow tge prexiptions script.

Personally I think that if like me you take opiates as prescibed they are safe and give excellent pain control but its the minority who take too many or don't take them as prescribed that are more lukely to have problems and who give ooiates a bad name.

I've come axross doctors who panic when they see my prescription and if I'm ever admutted to hospital they always take my meds off me then won't give me the dise I'm prescribed as its high. Which then causes me problems and a spime in my pain levels as my pain increases.

I'm allergic to Tramadil and meptazinol, some of the other painkillers I've tried are: Oxycodone gave me very little pain relief for severe pain, I've also taken.

Gabapentin, Amytriptyline, Duloxetine.

I take amuch higher dosage of opiates than any of my friends /family who had terminal cancer but like anyone who has severe pain I'm very quiet and rarely make any sound and you only have to visit a hospice to know the patients in the most lain are the quietest.

I hope the programme gives a balanced view of ooiates & how they can be lufesavers if precribed and taken correctly. There is always going to be a minority that abuse the system but thay shouldn't be allowed to spoil it for everyone. The UK can't be compared to USA their healthcare system is comlletely different to one thats free at source.

Kind regards,

David

Ehlers Danlos Syndrome, Cassical type (from Birth)

Famlial Hypercholesterol (from Birth)

Compmex Regional Pain Syndrome (dx- 2010)

Hypersomnia (dx- 2011)

Opiate Induced Sleep apnoea ( dx 2017)

[Jgs142326]

I think ur amazing at what u say about ur story but what about the people whos not lucky enough to have good drs like u and won’t give them breakthrough pain relief cause I’ve never used drugs in my life off the street etc and never wud I don’t drink alcohol cause I just don’t like it and haven’t for 10 years, I’m only 34 years old and I just come out of hospital and I went in and all I take is 150 slow release morphine and I take them all in one go

Cause when I split them they never helped my pain, now I’m ok for about 10 hours but I have nothing for night or breakthrough pain and when I went into hospital and like u they were basically taken my meds off me and making me wait a extra 14 hours to take them longer than I wud at home and I was in full withdrawals and I was screaming in pain as I had adhesions in my stomach and they said they were worried for me and they haven’t even seen cancer patients on what I was on and they cudnt treat me with anything more than paracetamol n oromoph which don’t touch me, I signed myself out and told my dr and he was discusted cause he said they r a hospital they shud of got me out of pain, some of us don’t mean to abuse pain relief we borrow extra off our parents like I do off my mum cause my gps don’t sound half as good as urs and they not trying nothing else with me and just leaving me in constant pain so try not to judge hun cause I know some people spoil it for the good ones but if I was put on higher stuff like u cause they said I have a extremely high tolerance I wudnt have to do things differently and take them differently to how I’m prescribed it’s awful when u r 34 years old and u loose 4 years of ur love to being in bed whilst u cud have the best life ever but pain takes over ur entire life, then depression kicks in it’s not fair lovely xx glad it works for u tho and glad u got a dr who seems to be trying a lot with u xx

Love Sarah Johnson